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1

Greeting Everyone,

My name is Charlie, I am sixty-eight year old and new to this forum. I recently developed EM symptoms. Prior to 2020, I was completely healthy, I played racquetball several times a week. Then, I developed a rash on my body and it was diagnosis to be Grover disease. The rash spread and I had to take prednisone to control it, and my life was never the same. I had an intensely adverse reaction to the steroidal medication, experiencing hot flashes every hour. The flare-up burned the skin of my body, as a severe sunburn would do: red, hot and peeling skin. My torso, front and back, more than 30% of the area was scorched. My limbs were also singed. My nerve was severely affected if not permanently damaged. At the time, I could not lift my legs to walk, barely able to move around the house by shuffling my feet. It took about 6 months for me to recover

Then about 8 months ago or 14 months after the horrible prednisone episode, my hands and feet turn red and swell every day for some a good part of any day. Sometimes the swelling of my feet spread upward to my legs. My face is always flushed and facial skin, ears and scalp are chapped. This happens daily, I cannot wear shoes or walk for a long time. During a flare-up, my hands tremble and prevent me from playing guitar. The flare-up also amplify the intensity of the itch from my rash. Cooling and taking gabapentin 3x300 mg daily help decrease the frequency and reduces the intensity of flare-ups.

My doctors did not diagnosis my disorder as EM. They ran a battery of lab tests that determined I have no inflammation or any autoimmune issue. However, they are reluctant to call it EM. Whatever it is called, the illness changed my lifestyle, limiting my activities. My symptoms match those of EM. Do any of my fellow EM sufferers recover from this disorder or is this a chronic disease, a life sentence? Thank you for your attention.

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I fully recovered but was half your age when it happened. My doctor said my age likely played a crucial role. That may not be what you want to hear.

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Hi Carter,

I appreciate your effort to reach out to me. It is so encouraging to hear that there is hope, and I am very glad to hear that you have recovered. As long as there is hope, it eases the despair of dealing with this strange disease.

All the best,

Charlie

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Charlie,

Take this with a grain of salt, since I’m not a doctor, but I believe the origin of erythromelalgia, and reason I recovered, is thus—

We all have genetic markers that make us susceptible to EM—only some of which have been identified. The condition often remains dormant until triggered by nerve damage (typically peripheral neuropathy). It’s why EM can appear secondary to a myriad of other conditions. When nerve damage is caused by a one-off event, such as injury or allergic reaction, it offers better prospects than damage caused by chronic underlying disease (autoimmune).

I recovered because I was relatively young, identified the condition soon after it began, had nerve damage from a one-off event, and found medication that worked well enough I could return to functional movement and fitness. The later of which was most important and allowed said damage to heal. Fitness is my passion and I engage in a very repetitive training routine that likely functioned as rehabilitation. I’ve spent literally thousands of hours moving my legs. In the end, for me the cause and cure may have originated from the same place—my extreme fitness routine.

The exact origin of my EM was never determined but could have resulted from overuse of ice application following a knee injury. I did have a cortisone shot and took an oral taper of prednisone a few months prior to onset as well.

Wishing you healing,

Carter

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Hi Carter,

I understand that everyone’s body is different, knowing what works for you may not work for others. Hopefully, we can at least find a way to manage the EM symptoms and go on with our lives. Nonetheless, your success story and your dedication to regain your health is inspirational to all EM sufferers.

-Charlie-

| CarterDK
May 22 |

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Charlie,

Take this with a grain of salt, since I’m not a doctor, but I believe the origin of erythromelalgia, and reason I recovered, is thus—

We all have genetic markers that make us susceptible to EM—only some of which have been identified. The condition often remains dormant until triggered by nerve damage (typically peripheral neuropathy). It’s why EM can appear secondary to a myriad of other conditions. When nerve damage is caused by a one-off event, such as injury or allergic reaction, it offers better prospects than damage caused by chronic underlying disease (autoimmune).

I recovered because I was relatively young, identified the condition soon after it began, had nerve damage from a one-off event, and found medication that worked well enough I could return to functional movement and fitness. The later of which was most important and allowed said damage to heal. Fitness is my passion and I engage in a very repetitive training routine that likely functioned as rehabilitation. I’ve spent literally thousands of hours moving my legs. In the end, for me the cause and cure may have originated from the same place—my extreme fitness routine.

The exact origin of my EM was never determined but could have resulted from overuse of ice application following a knee injury. I did have a cortisone shot and took an oral taper of prednisone a few months prior to onset as well.

Wishing you healing,

Carter

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Charlie? Hi👋🏼 I’m 69 but have had EM since childhood. My story obviously varies from yours. My worst years were when I was in my thirties and taking care of two children. The EM put me in a wheelchair for a while after my 35th birthday. It gradually got better so that I could walk, and it kept improving slowly through my 40s. Through the last 20 years I’ve had flare ups whenever my feet heat up from sunshine or wearing shoes. I wear sandals all year round ( not so easy in Montana) unless there’s snow. I keep a pair of flip flops, wear shoes to get from car to store or office, then switch to flip flops or other sandals when I get in a heated room.

My story may or may not give you hope! I wish you the best of health :vulcan_salute:t3:

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Hi Charlie, sorry you are going through all this. A few thoughts, and you should talk any changes over with your doctor.
When you had the Grovers experience, did you also take antibiotics or any other medications around that time? If so, which one?
I wonder if you are taking any supplements? Green tea? If so, consider trying some time off and see if you get somewhat better.
Are you too hot? California is a hot state which may not help. Have you tried swimming at your neighbourhood pool or beach? How do you feel afterwards? That night? Good exercise and may help with cooling.
Is it worse at night? Is it generally tolerable during the day? Can you sleep OK?
Have you looked at the difference between pregabolin and gabapentum? Maybe you could talk over with your doctor trying to cut down your doses or maybe you have already tried it.
Carter has hit the nail on the head, often it seems to come down to exercise, weight discipline and perhaps also alcohol use, smoking, diet, common sense things, they all seem to play into it. Weight is often the elephant in the room.
I wonder if you went through some severe emotional time in 2000 which wouldn’t have helped ? Did you get covid? Not necessary to reply with private information but these things may come into the big picture.
Do you feel like your doctor really cares and is making a big effort to help?
I don’t believe you necessarily have a life sentence, but i would not want to give you false hope. As you research and try different things you may well improve, and there have been spontaneous healing of EM.
All the best, I am also 68.

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Hi Chaos,

Thank you for sharing your sixty-year experience of coping with EM with this newbie. I am impressed with your perseverance and glad for the improvements that you have made over years. Your story makes me realize that I am blessed, having over sixty-year of good health. It also gives me courage to deal with EM head-on.

Best wishes,

-Charlie-

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Hi Kiwi,

Thank you for looking into my EM experience. The response to some of your questions and suggestions are as follow:

“… talk any changes over with your doctor” Right now my case to referred to a rheumatologist and I am waiting to hear the results. My PCP recommends that in addition to gabapentin, I take nortriptyline to sleep better. My B12 level is in the normal range, she encourages me to take supplement, stating that older people usually do better with a higher level of B12 in their systems.

‘’When you had the Grovers experience, did you also take antibiotics or any other medications around that time? If so, which one?” I had Grover 2018, and got worse in 2020. I was not on any biotics until the horrible experience with prednisone. When my skin was torched and raw I was on doxycline to prevent infection.

“Is it worse at night? Is it generally tolerable during the day? Can you sleep OK?” It is generally more tolerable during the day. Without any trigger, like heat or pressure from wearing shoes, I feel good in the morning after the ebbing of the nightly heat. The flare-up usually begin after lunch. It is worse at night not only because of the rise of the body heat; it is the body heat that amplifies the intensity of the itch from my rash. It keeps me awake.

“… consider trying some time off and see if you get somewhat better.” I am a college teacher and have the whole summer to convalesce. I hope my EM symptoms will be lessened by then or else I will have to teach in a wheelchair in the fall semester (now that classes will be in-person). I am not ready to retire yet.

“… Good exercise and may help with cooling.” I live the SF-BA, it is cool most of the time. I walk every day during mid-morning before the flare-up comes, and cooled my feet on cold floor tiles afterward to prevent a triggered event.

“ pregabolin (Lyrica) vs gabapentin?” Both drugs act on the same physiological target, calcium channel. The structures are also similar, gamma-aminobutyric acid (thus the name gaba). I will stay with gabapentin for a while. It does not prevent the flare-ups but minimizes their frequency and intensity. More importantly for me, it stops the tingling in my feet.

“… if you went through some severe emotional time in 2000 (2020?) … ?” I did not have COVID or any other issue, thank goodness. Prednisone did me in, I have no doubt.

“Do you feel like your doctor really cares and is making a big effort to help?” I belong to an HMO. The doctors have limited time for each patient. I have seen my PCP, dermatologist and now a rheumatologist. I believe they care and doing the best they can.

“…I don’t believe you necessarily have a life sentence…” It is affirming to know my EM peers are willing to share their experience and knowledge dealing with this disorder; they broaden my perspective on EM from a sufferer point of view. EM or not, I will try to live my life to the fullest, but aware of the limitations.

Best wishes,

-Charlie-

| kiwi
May 23 |

  • | - |

Hi Charlie, sorry you are going through all this. A few thoughts, and you should talk any changes over with your doctor.
When you had the Grovers experience, did you also take antibiotics or any other medications around that time? If so, which one?
I wonder if you are taking any supplements? Green tea? If so, consider trying some time off and see if you get somewhat better.
Are you too hot? California is a hot state which may not help. Have you tried swimming at your neighbourhood pool or beach? How do you feel afterwards? That night? Good exercise and may help with cooling.
Is it worse at night? Is it generally tolerable during the day? Can you sleep OK?
Have you looked at the difference between pregabolin and gabapentum? Maybe you could talk over with your doctor trying to cut down your doses or maybe you have already tried it.
Carter has hit the nail on the head, often it seems to come down to exercise, weight discipline and perhaps also alcohol use, smoking, diet, common sense things, they all seem to play into it. Weight is often the elephant in the room.
I wonder if you went through some severe emotional time in 2000 which wouldn’t have helped ? Did you get covid? Not necessary to reply with private information but these things may come into the big picture.
Do you feel like your doctor really cares and is making a big effort to help?
I don’t believe you necessarily have a life sentence, but i would not want to give you false hope. As you research and try different things you may well improve, and there have been spontaneous healing of EM.
All the best, I am also 68.

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Hi Carlie, Sorry to hear your in the thick of it without much help. I am 80 and got EM in the both feet at 70. I also was in good shape ran everyday and did about 25 marathons. I diagnosed myself in one week. Went to tons of doctors who agreed. Tried most medicine’s without help. Like you prednisone was a horrific… Took over a year to get off it…
I found a life saving device on Amazon 8 yrs ago. I did flare on feet 5 to 10 times a day. Have not worn shoes in 10 yrs…Couple of times with weddings etc… So my device is called Cryo/Cuff. It is a bucket half ice and half water with gravity feed hose to two cuffs. The pain could be a 10 and I slide the cuff on and it goes right away…I never let it get to 10…Anyway I run every day now knowing the burning will be 8,9,or 10when I finish. But I slide the cuff on and gone!..I drive with one on if needed. I take 75 mg of Lyrica 4 times a day…So if your feet are bad this is great… I put the two cuffs on before I go to bed and sleep all night. Sometimes I wake up and drain and refill…I will try to put a picture here…Hope this helps

11

th-1

See above…This is my life saver!!!

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Hi Pilgrim,

It is very encouraging to know that you are able to run with the cooling aid of the Cryo/Cuff afterward. I will look into the suitability of the device for life style and my symptoms. Thank you.

Best wishes,

-Charlie-

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Hi Charlie,
I take my hat off to you for being a school teacher and at the same time taking gabapentum 300mg three times a day.
I guess you have to have a few coffees during the day !
Hope the nortriptyline helps with sleep.
You are very brave and determined and I bet you are a very good teacher.
All the best

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Hi Pilgrim,
That’s amazing that you are 80 and go for regular runs!
Setting a good role model and encouraging for the rest of us.
All the best

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Hi Kiwi,

Thank you for your kind words of support, I need them! I have finally accepted that I have to learn to live with the EM symptoms. I am learning how to minimize the flares by avoiding triggers like heat, tight shoes, sitting or standing for extended periods. I am accepting the fact that my sleep will be constantly disturbed by flares, with or without taking nortriptyline. Thus, I take naps in the afternoon. Gabapentin seems to help to minimize the frequency and intensity of the flares; it gives me no side effects. I am maintaining a regular exercise routine. I live in a hilly area, and I walk up and down the incline for 30 minutes each day. I will try some more rigorous exercise routines like running and playing racquetball this week. I hope by the fall, I can teach “normally”

All the best,

Charlie

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Hi Pilgrim,

I am learning how to live with EM, able walk and jog. I am trying to play racquetball again. If I do, I will definitely need to cool my hands and feet afterward. As per you suggestions, I googled cold therapy and got some ideas what I may need. If you have additional suggestions regarding accessories and operation of the machine, please let know. Thanks again!

All the best,

Charlie

1 Like